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Improving Care for Individuals with Learning Disabilities: LeDeR Reviews and Action from Learning

Learn about the LeDeR reviews conducted to improve the standard of care for people with learning disabilities. Explore the findings in Hertfordshire and the actions taken to address health inequalities.

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Improving Care for Individuals with Learning Disabilities: LeDeR Reviews and Action from Learning

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  1. Tracey BrennanRegional Coordinator (NHS England) & LeDeR Local Area ContactLeDeRLearning Disability Review of Mortality

  2. Background There has been research and reports written that show people with a learning disability die younger than people without a learning disability, often due to health inequalities ….. This should not happen. https://www.bing.com/videos/search?q=mencap+video+youtube&&view=detail&mid=B276DD59C182B34BF5BFB276DD59C182B34BF5BF&&FORM=VRDGAR

  3. LeDeR Reviews are being carried out with a view to improve the standard and quality of care for people with learning disabilities - Anyone with a LD aged 4 years and over May’19: National report & NHSE Action from Learning • Women dying 27 years & men 23 years than gen pop • 58% male • 90% White British • Reasons: pneumonia; aspiration pneumonia, sepsis (48%) Other’s inc. Dementia, Ischaemic heart disease; epilepsy https://www.youtube.com/watch?v=7bQR5m48C7o&feature=youtu.be

  4. Steering Group: Independent Chair - Dr.Kirsten Lamb CCG Heathwatch Experts by experience – family carer and person with a LD All 4 Trusts ADS/ CLDN HCPA Links with Coroner & CDOP Quality assure reviews & accept recommendations/ Learning LeDeR Hertfordshire Review : Family/ person who knew individual well Notes/ Discussions with professional • Action from Learning: • Improving Health Outcomes Group – the ‘doers’ • Same representation as on Steering group but operational staff and several specialist practitioners - end of Life; sepsis; specialist dentistry and Public Health • Have developed a shared action plan across steering group and IHOG • What evidence change has been effective?

  5. What have we found in Hertfordshire? • The number of cases reported in 17/19 was 45 and 60 in 18/19. This represents a 33% increase for 18/19. This may indicate an increased knowledge of the LeDeR process and the requirement to report a death to the University of Bristol • Of the number of reviews not yet allocated (62), 18 cannot be progressed due to other investigations being carried out, e.g., safeguarding, SI, Police investigation. This equates to almost 30% of the unallocated reviews.

  6. The Median age of the cases reported in total since April 2017 is 63 yrs (58yrs nationally) • In line with the national report published this year, the top 3 reasons for cause of death are pneumonia, aspiration pneumonia and sepsis. These account for almost 49.5% of the total deaths reported since April 17. • ‘Other’ causes of death reported include an overdose; choking on food. For one case the cause of death was stated as ‘Downs Syndrome’.

  7. What have we found in Hertfordshire? • Poor understanding/ application of Mental Capacity Act • DNACPR processes not always followed • No advance care planning taking place • End of life plans put in place too late • Limited examples of joined up working • Diagnostic over-shaddowing … is happening in Hertfordshire

  8. Action From Learning Respiratory • Increased the take up of flu jabs to reduce the potential risk of pneumonia • Establishing additional physio and postural support services reduce pneumonia and aspiration pneumonia • Local dysphagia pathway in place – G.P have access to knowing how to identify signs of dysphagia and make referrals. • Sepsis – Resources and developed and Purple All Stars song

  9. Action From Learning Advance Care Planning • ‘My Plan’ being put into easy-read End of Life • Easy-Read DNACPR information • Training available for providers to enable staff to feel able to support someone wishing to die at home

  10. Action From Learning Dementia & Epilepsy • Pathways specific to Hertfordshire developed Reasonable Adjustments • Web page • Easy-read information • Purple Star Strategy • Carers Annual Health Check prep tool • Training

  11. Useful links www.bristol.ac.uk/sps/leder/ www.england.nhs.uk/learning-disabilities/improving-health/mortality-review/leder/action-from-learning/ www.hertfordshire.gov.uk/LDmyhealth www.gov.uk/government/collections/reasonable-adjustments-for-people-with-a-learning-disability tracey.brennan@hertfordshire.gov.uk or tracey.brennan3@nhs.net

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